原发性直立性震颤患者的健康相关生活质量受到严重影响。
Health-Related Quality of Life Is Severely Affected in Primary Orthostatic Tremor.
作者信息
Maugest Lucie, McGovern Eavan M, Mazalovic Katia, Doulazmi Mohamed, Apartis Emmanuelle, Anheim Mathieu, Bourdain Frédéric, Benchetrit Eve, Czernecki Virginie, Broussolle Emmanuel, Bonnet Cecilia, Falissard Bruno, Jahanshahi Marjan, Vidailhet Marie, Roze Emmanuel
机构信息
Département de Neurologie, EA 4184, Hôpital universitaire de Dijon, Dijon, France.
Department of Neurology, St Vincent's University Hospital, Dublin, Ireland.
出版信息
Front Neurol. 2018 Jan 15;8:747. doi: 10.3389/fneur.2017.00747. eCollection 2017.
BACKGROUND
Primary orthostatic tremor (POT) is a movement disorder characterized by unsteadiness upon standing still due to a tremor affecting the legs. It is a gradually progressive condition with limited treatment options. Impairments in health-related quality of life (HQoL) seem to far exceed the physical disability associated with the condition.
METHODS
A multi-center, mixed-methodology study was undertaken to investigate 40 consecutive patients presenting with POT to four movement disorder centers in France. HQoL was investigated using eight quantitative scales and a qualitative study which employed semi-structured interviews. Qualitative data were analyzed with a combination of grounded-theory approach.
RESULTS
Our results confirm that HQoL in POT is severely affected. Fear of falling was identified as the main predictor of HQoL. The qualitative arm of our study explored our initial results in greater depth and uncovered themes not identified by the quantitative approach.
CONCLUSION
Our results illustrate the huge potential of mixed methodology in identifying issues influencing HQoL in POT. Our work paves the way for enhanced patient care and improved HQoL in POT and is paradigmatic of this modern approach for investigating HQoL issues in chronic neurological disorders.
背景
原发性直立性震颤（POT）是一种运动障碍，其特征是由于影响腿部的震颤导致站立静止时不稳定。它是一种逐渐进展的疾病，治疗选择有限。与健康相关的生活质量（HQoL）受损似乎远远超过与该疾病相关的身体残疾。
方法
开展了一项多中心、混合方法研究，对法国四个运动障碍中心连续收治的40例POT患者进行调查。使用八个定量量表和一项采用半结构化访谈的定性研究来调查HQoL。定性数据采用扎根理论方法进行分析。
结果
我们的结果证实POT患者的HQoL受到严重影响。害怕跌倒被确定为HQoL的主要预测因素。我们研究的定性部分更深入地探讨了我们的初步结果，并揭示了定量方法未发现的主题。
结论
我们的结果说明了混合方法在识别影响POT患者HQoL的问题方面的巨大潜力。我们的工作为改善POT患者的护理和提高HQoL铺平了道路，并且是这种研究慢性神经疾病中HQoL问题的现代方法的典范。
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